Act on Health Sector Database
The Act on Health Sector Database, also known as Act on Health Sector Database, No. 139/1998, the Health Sector Database Act and in media by other colloquial names, was a 1998 act of the Icelandic Parliament which allowed the Icelandic government to grant a license to a private company for the creation of a national biological database to store health information which could be used for research. The act was noted for boldly introducing policy related to biobanks and was the subject of controversy.{{cn|date=December 2023}}
deCODE genetics did most of the lobbying for the act and was the beneficiary of the license to create the database.{{cn|date=December 2023}}
Controversies
The passing of this act spurred international discussion about what policies were already in place and what differences in policy existed among biobanks.{{Cite journal | last1 = Austin | first1 = M. A. | last2 = Harding | first2 = S. | last3 = McElroy | first3 = C. | doi = 10.1159/000069544 | title = Genebanks: A Comparison of Eight Proposed International Genetic Databases | journal = Community Genetics | volume = 6 | issue = 1 | pages = 37–45 | year = 2003 | pmid = 12748437| s2cid = 20931713 }}
The establishment of a national database for all Icelandic citizens raised discussion about the nature of the informed consent process for the project.{{Cite journal | last1 = Arnason | first1 = V. | title = Coding and Consent: Moral Challenges of the Database Project in Iceland | journal = Bioethics | volume = 18 | issue = 1 | pages = 27–49 | year = 2004 | pmid = 15168697 | doi = 10.1111/j.1467-8519.2004.00377.x| s2cid = 7633275 }}
References
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External links
- {{official website|https://web.archive.org/web/20120402000839/http://eng.velferdarraduneyti.is/acts-of-Parliament/nr/17659%7D%7D}}, English translation
- [https://web.archive.org/web/20131101123138/http://www.who.int/genomics/elsi/regulatory_data/region/euro/061/en/index.html World Health Organization summary]
Category:Health law in Iceland